Author: Pam M (206.172.22.---)

Date: 05-13-02 13:15

Hi I am 27 yrs old and have 2 sons. From my grandparents on down everyone is still alive. One g-grandma died of cancer, another of a heart attack. They were both over 70 yrs. My g-grandpa died of a stroke at 83 and am not sure of the other one, but he was around 80 as well. Nobody other than myself has been diagnosed with HCM. Both my sisters and my mother, grandparents and some aunts/uncles/cousins have been checked and they do not have it. About 6 months ago, I had both my sons-ages 9 and 1 and a half -tested and so far they are in the clear. Now I was told that this is hereditary and that most people develope it around their mid-late teens and early twenties.(Which was the case with me).

Does anyone here not have the hereditary kind?

My Cardiologist says that rarely it can be caused by a mutated gene(something like that).

The pain of just waiting to see if I have passed this on to my children is taking its toll on me. I worry every time they run or play rough- how do any of you with young children cope with the stress?


[Re: hereditary]

Author: Laura (---.proxy.aol.com)

Date: 05-13-02 15:45

I too have two children, both are clear so far. I am forty two and was diagnosed at 39. I played basketball, cheered, softball, skated and was very active in most sports. My mom died suddenly at 62. She probably had HCM.

All you can do is have your kids checked every two years. You cannot do anything to prevent it. So love everyday and let them be kids.

I had to go to a year of therapy and was on prozac for a year. I do not take it any longer, but I was so worried and depressed after I was diagnosed that I needed the help. So do not be afraid to seek help if you need it.

Good luck to you


[Re: hereditary]

Author: Amy (---.bna.bellsouth.net)

Date: 05-14-02 04:36

Hello Pam,

At first my HCM was thought to be non-familair. I had rheumatic fever go to my heart, heart infection, then HCM. No one had died at a young age in the family and I have 107 first cousins on one side of the family alone! I was the only one with it for 14 years, then my sister had a baby at age 35, about 10 days later she returned to the hospital her whole body was swollen. She had never had any type of problem with her heart before hand, that nite she went into cardic arrest not once but 37 times over the next 36 hours! This is when they found that she too had HCM, the stress of the pregnancy had been too much for her heart and in turn brought it to light. Since then everyone else in the family has been checked, it seem that my mother also has a very mild form of HCM, that did not show it's first sign in her until she was 60. No one else has it, some researchers beleive that it can skip a generation all together and show up again in the future. DNA show two genes, I think it was two anyway, for it just like with cancers some get some don't.

HCM can be caused by a virus, do you ever remember having strep throat, strep infections an go to the heart. Eating disorders and pregnancies can overwork the heart and cause the muscles to enlarge. Bacteria from dental work can also find a way to the heart and cause infection.

I had a reacuring type of rheumatic fever that came and went for several years and was treated as a sinus infection, the symtoms were a sore throat, sore jaw, and earache, antibotics would knock it out for about 4 weeks then it would be right back again, the doctors never did a swab test for rheumatic fever until the heart infection was found.

Check with the National Organization for Rare Disarders, they have a website, they sent me some wonderful information on HCM and some of the research that has been done on it.

I think that we all hope and pray that we have not passed this on to our childern, but must of us had no idea that we could. When I was diagnosed they really were not sure if it could be passed on, and you could never find any information on HCM. It is nice to have sites like this one to provide information and support.



[Re: hereditary]

Author: Debbie (---.glen-net.ca)

Date: 05-14-02 12:30

I completely understand your worry about your children. My husband was diagnosed a month ago and our whole world has been turned upside down. We have 2 boys age 6 and 8 and are worried sick about them. Soccer and ballhockey has just started and I really don't want them playing. Their doctor thinks I am worrying about nothing. We have asked to have them referred to a cardiologist at a childrens hospital., so we don't know if they are okay or not. Our 6 year old has a heart murmur, and our 8 year old had a heart murmur until age 4 but the Dr. doesn't hear it anymore. The worst part of this disease is the not knowing. I know this doesn't help you out, but sometimes it helps to know that you are not alone. Take care.


[Re: hereditary]

Author: Sherry (---.ras11.floca.tii-dial.net)

Date: 05-14-02 21:03

I to am a mother of two children that may develope this disease in the future. My husband was diagnosed 13 months ago.

We went through the devistation of knowing that two of the kids could have this also. It took a toll on all of us!

It was so bad that we all ended up hollering at each other last Father's Day (what a time to loose it).

At that point we sat down as a family and decided we needed to enjoy our lives. None of us know what tommorrow will bring.

My husband has been through two alcohol ablasions, a triple cabg, and myectomy since diagnosis.

"We've been through **** in a Hand Basket!' But ya know what? Tommy is still here to play with the kids! (not like he use to)

We've just had to modify activities. The kids (17) & (5 1/2) were cleared this past year. We will take them for testing yearly for EKG & ECHOs.

Kids need to be kids. None of us want to loose our children and when something like this comes up, we want to protect every hair on their heads.

We must also not loose sight that they are kids full of energy and life is to be lived.

We must put the kids in God's hands and enjoy everyday we have together.

It is also okay to ask your primary doc to help you through the anxiety. Most of us on this site have had to ask for helpin one way or another.

Good luck, God be with all of you!


[Re: hereditary]

Author: lisa (208.47.172.---)

Date: 05-20-02 17:03


A correction, HCM is not caused by an infection/virus. HCM is a genetic condition and therefore it is "caused" by your genes. Other forms of cardiomyopathy can be caused by a virus such as dilated cardiomyopathy (this is when the heart walls thin and the heart becomes enlarged, rather then the heart being large due to thick walls)


If you have HCM then it is a waiting game now, sorry, but hopefully in a few years we will have better testing to know who is a gene carrier. For now this testing is research only, and frankly even if it is found out that your child has the gene, it means nothing until the child shows signs of the condition.

Until then your best action is to screen the children every 18 months begining at puberty until age 20-25 yrs then every 5 years. Unless any symptom appears or changes in the heart sounds, then it is wise to re screen at that time.

Hope this information helps.

All the Best,

Lisa Salberg




[Re: hereditary]

Author: Julie (---.mik-mn-1-55.rasserver.net)

Date: 07-31-02 12:39

My father had this gene testing, along with his 3 siblings (2 half, one full) at the U of MN about 10 years ago. My father was told he does not have the gene. Does that mean I could still inherit HCM because it runs in the family? One half sister tested negative and one half sister and his full sister tested positive. Thanks!